Hi Teacup,
I’m back at home after being away with work.
As I was saying, it is worth getting the NICE (or SIGN) guidelines and also getting copies of your medical notes (from both the GP surgery and the breast clinic/hospital). Also ask for copies of the ultrasound scan and/or report and any other tests that you have had.
If you are going to discuss your delay in diagnosis with the medics please be aware that if a mistake has been made they are going to want to smooth it over. All doctors make mistakes at some moment in their career and there is a great fear of being sued. This means that there is a tendency for medics to stick together. Representatives of the NHS Trust won’t necessarily want to be open either; again there is a fear of being sued.
You need to be sure about what you want. Ideally you would want to find out that a mistake hasn’t been made and that the breast cancer has been caught at the earliest stage possible. How would you feel if you find out that there has in fact been a delay in diagnosis which could have been prevented? Could you cope with this in the middle of treatment? Do you want to start asking questions now or would you prefer to wait until after treatment?
In my own situation I wanted the truth, no matter how unpalatable. I also wanted to prevent the same thing happening to anyone else. If this is how you feel then it is worth pursuing. But you do need support.
If you decide to go ahead you need to decide who you want to talk to about your concerns. You could have a meeting with the consultant. If you want to be taken seriously then I suggest that you consider writing to the Trust for a meeting with the consultant and the chief executive of the NHS Trust (In my case my first meeting was with the consultant in charge of the breast clinic and the chief executive of Forth Valley NHS Board; my second meeting was with the chief executive of Forth Valley NHS Board, the chief executive of Forth Valley Acute Trust and the chief executive of Forth Valley Primary Care Trust.)
Before you have any meetings I suggest that you write down all that has happened to you - GP and Breast Clinic appointment dates and times, medics you saw, details of all conversations, dates and times of any tests you had. In short, everything. This means that you know what you know. Should anyone quibble about what happened at a particular appointment you have your version to refer to in black and white.
Be aware that several arguments may be used which are designed to put people off finding out about delays.
‘The triple assessment is a gold standard to be aspired to’. This is rubbish. No, it is evidence-based best clinical practice that breast clinics are required to follow.
‘Guidelines are only guidelines and it is up to the doctor to make a clinical judgement’. This is misleading. The guidelines are clinically and legally robust and have been cited in successful medical negligence cases. It is true that there are reasons why someone might not use the Triple Assessment. One example might be if a patient had had a lump previously investigated using all three parts of the Triple Assessment and found to be benign but was morbidly afraid of cancer and so returned time and time again to a breast clinic to demand more and more biopsies. In such a situation a doctor might feel that it was in the patient’s best interests to refuse the triple assessment. A second example might be if there was an underlying medical condition which might prevent one part of the triple assessment. For instance mammography wouldn’t be carried out on a pregnant woman and it may be that a core biopsy would be carried out on a patient with haemophila. A third example might be if a miraculously improved new investigative technique was suddenly available. Doctors wouldn’t stick rigidly to guidelines; they would use the new better test for breast cancer immediately.
‘Forget about the past and concentrate on the future and staying well’. This is patronising at best. Be aware that people who have a delay in diagnosis often have to deal with that delay before they start dealing with the diagnosis itself. This means that your decision to ask questions about a possible delay in diagnosis is a perfectly reasonable thing to do.
If you do decide to have a meeting write down all the questions you want to ask and whatever you do don’t go to the meeting alone. Take at least one other person with you. When I had my meeting with the consultant and the chief executive of the NHS board I took my husband and a family friend. My husband listened to what was said and asked some of the questions and the family friend took notes. This was very wise because it was all very upsetting and I needed to be clear on what had been said. Also what ever you do don’t mention the possibility of legal action, even jokingly. If you do no one will have a meeting with you.
I hope that this is helpful.
With very best wishes,
Sue